Manisha Chaubal-Menon remembers the long and torturous procedure of her blood being drawn from a pulsing vein. She was having dialysis and she needed it to survive.
After being diagnosed with the kidney disease IgA nephropathy when she was 38, her kidney function rapidly declined to 10 per cent and she was put on the waiting list for an organ transplant.
But despite battling an incurable disease, she refused to stop Bollywood dancing.
“I tell everyone not to spoil today by thinking about the future because you don’t know how much time you have,” said Ms Chaubal-Menon, who was born in India and lives in Kew, Victoria.
It was while producing a show with her partner at the Bollywood Dance School that she made a new friend who would insist on becoming her live donor.
Organs from donors of the same ethnic background are more likely to be a close match to patients in need of transplants. Ms Chaubal-Menon’s donor was also of Indian background.
“I’m indebted to him for life,” she said of the successful transplant in 2012.
“I was blessed to have had a godsent person in my life to do this. Not everybody has this.”
Now 51, Ms Chaubal-Menon wants to encourage other members of Australia’s Indian diaspora to talk about organ donation, which she said can be taboo.
“Some people literally walk away when you start talking about organ donation … They just say they don’t want to talk about it.”
Calls for more migrant donors
The Organ and Tissue Authority (OTA) said of the 463 people who were able to be organ donors when they died last year, only 112 were from migrant backgrounds.
There are more than than 7.6 million migrants living in Australia.
OTA national director Helen Opdam said one of the reasons donation rates are low is that families simply don’t know what their loved ones want to happen to them after they have died.
“Having that conversation with your family, letting them know that you are willing to be an organ donor after you die is really important,” she said.
In order to be a donor, a person must die in hospital, usually while on a ventilator or in intensive care.
But only around two per cent of people who die in hospitals meet these requirements and despite their wishes, the decision to become a donor comes down to their families.
The effects of the COVID-19 pandemic have only further impacted the situation, with the OTA reporting a 16 per cent decrease in organ donors last year.
Minister for Regional Health David Gillespie said “an organ donation is a rare event. This means there is always someone who will need a transplant in Australia”.
“One day it might be you, or a family member.”
This year, DonateLife Week is aiming to encourage 100,000 Australians to join the organ donation register online by tackling common myths and misconceptions.
OTA VIC state medical director Dr Rohit D’Costa and ACT donation specialist nursing coordinator Jill Cunningham appear in one campaign video.
“Many religions don’t support organ donation. Absolutely untrue. Most religions in fact do support organ donation as the ultimate act of giving,” they say.
How donors change lives
Melbourne woman Kristy Luong is a second-generation Chinese migrant.
After an adolescence tainted by illness, her kidneys failed at 22. She spent four years on dialysis while waiting for a donor match.
When the day finally arrived, Kristy was so struck by the news, she got on the wrong tram home.
“I remember my mum was crying on the phone. My sisters were crying. I was crying,” she said.
“After I got off the phone, a lady came up to me and congratulated me because she was eavesdropping on the tram.”
At 31, Kristy said donation gave her more than a second chance at life.
“I wouldn’t be able to start my own family. I have a 14-month-old son now, he’s my life.”
DonateLife Week marks its 10th anniversary this year and is held from 25 July to 1 August.
Sign up to become a donor at donatelife.gov.au